A woman’s ‘rare’ journey: life with an uncommon disease

Everyone has a rare quality or a characteristic that sets him or her apart from others – a special talent, a unique interest or, for some, a rare disease. People living with rare diseases are extraordinary in many ways, often demonstrating exemplary traits when faced with extraordinary challenges.

July 25, 2012 - 12:11 am

Everyone has a rare quality or a characteristic that sets him or her apart from others – a special talent, a unique interest or, for some, a rare disease. A disease is considered ‘rare’ if it affects fewer than 200,000 people in the United States. There are 7,000 known rare diseases affecting 30 million people, or one in 10, Americans. For comparison, one common disease, diabetes, affects more than 25 million Americans, according to the Centers for Disease Control and Prevention.

People living with rare diseases are extraordinary in many ways, often demonstrating exemplary traits when faced with extraordinary challenges. Lacey Williams, a young adult who is currently attending college in Spokane, Wash., has overcome difficulties that other people her age will likely not face in their lifetime because of her rare disease, hereditary angioedema (HAE).

Williams’ rare disease journey began at age 4 when she was diagnosed with HAE. HAE is a genetic disease that affects about 6,000 people in the United States. People with the disease can get repeated swelling attacks anywhere in the body, including their arms, legs, hands, feet, stomach, genitals, face or throat. HAE attacks can be unpredictable, painful, debilitating and disfiguring. This often makes everyday activities like walking, driving or even fastening a button difficult, or even impossible. Many patients with HAE also live in fear of a swelling attack in the tongue or throat, which could be fatal if the airway closes.

Growing up, Lacey, like many people living with a rare disease, found her condition embarrassing and alienating. She wanted to fit in and be “normal,” so she hid her HAE from her friends and classmates. Williams feared that people would treat and look at her differently if she told them the truth about her disease. But during her senior year of high school, Williams’ perspective on having a rare disease changed. She hesitantly revealed her condition to some close friends and family, finding them to be not only understanding, but remarkably supportive. Embracing their support, she realized she no longer needed to deny her rare disease. Instead, she saw the importance of using her story to help other people with rare diseases accept and embrace them as unique.

Williams was determined to not let HAE set her back. She maintained a positive outlook and stayed involved in school and sports, including basketball and lacrosse. “My swelling attacks affect me physically, but I don’t let them stand in my way,” says Williams. “I live my life and keep up with my priorities daily, even if I’m dealing with a swelling attack.”

Williams feels lucky that there are now treatment options available for HAE; 95 percent of rare diseases do not have treatments available. Since opening up about her disease, Williams has given speeches at local schools about HAE, as well as discussed her condition in her college essay. Her story was even featured in a newspaper and on a TV news segment in her hometown. She hopes that this recognition will continue to raise awareness about rare diseases like HAE, encourage tolerance for people with differences that make them rare, and improve the road to diagnosis and treatment for those dealing with a rare condition.

“Hereditary angioedema has taught me to put up with hardships and continue on with my responsibilities. The most important thing that I’ve learned from this disease is not to let uncontrollable adversities overtake my ambitions,” says Williams.

For those living with HAE, please visit www.HAEA.org. For those interested in rare diseases, the people living with them, as well as ways to embrace being “rare,” please visit www.globalgenes.org.* To learn more about HAE, including how HAE impacts people living with the disease, visit www.HAEandMe.com, an online resource for people with HAE, their friends and family members that offer tips and advice for people of all ages. (*These links will take you to third party sites containing information that is reviewed or managed by the respective parties responsible for the content.)

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